by Ileana Balcu | Mar 20, 2013
Please join us for a tweetchat this evening – Wednesday March 20 at 8 PM ET/ 5PM PT. We’ll talk about: What’s new with Gimme my DAM Data #gmdd ? – Wall Street Journal picked the story at SXSW conference...
by e-Patient Dave | Jul 17, 2012
As Meaningful Use rolls out, and providers are required to share data with us, there are a lot of concerns about whether their lives will spin out of control as patients besiege them with ignorant questions. We’ve discussed this in our many posts about the...
by Kathleen O'Malley | May 7, 2012
E-Patient Hugo Campos, whose quest to obtain his medical data has been followed by the media (including this blog) over the past several months, appears in a new interview in SFGate.com. He discusses a common fear of e-patients — that he may be perceived by...
by e-Patient Dave | Jan 20, 2012
We often say here “Gimme my damn data,” referring to our sentiment that data about our health is our data, about us, created for our well-being. And as the saying goes, “Nothing about me without me.” And where, we might ask, is that more vital...
by e-Patient Dave | Jan 3, 2012
Followers of our “gimme my data” series will get a rough-edged refresher about current reality by the well-written and raw story of @WilliamDale_MD’s Sunday post Medical Health Record: A Personal Journey Down the Rabbit Hole. A great narrative by a...
by e-Patient Dave | Dec 20, 2011
This post contains street language about body parts, harvested from Twitter last night with Xeni’s permission. This is a story of a non-medical person getting it in gear when she finds herself in need, and what happens when she does. A famous blogger/journalist...
by e-Patient Dave | Oct 20, 2011
An essential aspect of participatory medicine – and Federal meaningful use criteria – is patients having a copy of their health data, so they can (a) understand it and (b) take it wherever they want. That includes radiology images. This is not a new issue...
by e-Patient Dave | May 8, 2010
This is an essay I (mostly) wrote April 28 on Vince Kuraitis’s e-Care Management Blog, part of his series with David Kibbe MD about the Federal EMR incentives, titled “Is HITECH Working?” The series is, in my opinion, the most useful update...
by Danny van Leeuwen | Nov 11, 2016
On September 26, 2016, President Obama recognized Health IT Week by saying: We have worked to clarify an individual’s legal right to access their health information and transmit it where they choose—whether it’s to a family member or to their smartphone. These efforts...
by Alicia Staley | Feb 8, 2016
SPM members Janice McCallum and Pat Rioux are also members of the New England chapter of HIMSS, the gigantic Health Information Management Systems Society. They have arranged a special deal for SPM members: free admission to their March 29 meeting (if you register by...
by e-Patient Dave | Oct 28, 2015
For whose benefit does the healthcare industry exist? For the investors, or the people whose needs are the reason for the industry? Facebook last night was celebrating a small but significant legal victory this week for the “gimme my DaM data” movement (“Data about...
by Casey Quinlan | Jan 14, 2015
The Health Data Consortium, the folks who bring Health Datapalooza to life in DC every year, have increased the input of the Consumer Circle ahead of this year’s event, which is on the calendar for May 29 thru June 3 at the Marriott Wardman Park in Washington...
by e-Patient Dave | Jul 15, 2014
I’m saddened (really saddened, as I write this) to report that one of the titans of our movement, Jessie Gruman, died unexpectedly yesterday at home in New York. She had long been sick, but the demise was sudden. In addition to the mountain of work she produced...
by e-Patient Dave | Dec 19, 2013
As we’ve said endlessly here (and in Washington), one of the key enablers of better healthcare is access to information. For that subject there’s no more important job in the world than America’s National Coordinator for Health IT, who runs ONC...
by e-Patient Dave | Mar 4, 2013
Update March 24: I’m retitling this post, and putting it on hold, pending resolution of important concerns raised by other members of our Society for Participatory Medicine. In particular, see Adrian Gropper’s posts on The Health Care Blog. This is almost...
by David Harlow | Nov 30, 2012
The latest news story to examine the issue of patient access to implantable cardiac defibrillator data (a variation on the theme of “gimme my damn data”) is an in-depth, Page One Wall Street Journal story featuring Society for Participatory Medicine...
by e-Patient Dave | Oct 23, 2012
Quick, quick, do this now! Go add your signature to the hundreds who have already signed – this is about getting us access to our lab results, the same as any other health data! How important is this? Here’s a video of SPM member Ann Waldo discussing it...
by e-Patient Dave | Oct 22, 2012
TEDMED last April was a big time for our Society. Many members were there, especially our artist-in-residence Regina Holliday and videographer Ross Martin, who collected the footage for his now-famous Gimme My DaM Data video. And, as we reported here, The Role of the...
by Joe Graedon | Sep 18, 2012
Following up on Susannah Fox’s superb summary of Medicine 2.0 Day One, I would like to offer some overview and comments about day two. This was my first Medicine 2.0 meeting. I had heard a lot about Gunther Eysenbach, MD, MPH, and his merry band of...
by e-Patient Dave | May 28, 2012
Quick update before I go out and play: SPM member @AfternoonNapper just notified me that two more of us, Katherine Kelly Leon and Sharonne Hayes MD, are also on NPR today! Patients Find Each Other Online To Jump-Start Medical Research I awoke this holiday morning to a...
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